Good News for Parents of Kids with Celiac Disease

celiac wheatAfter two family members were diagnosed with celiac disease last year, I took inventory of my own physical complaints. While mild and manageable, they matched up with symptoms typical of a gluten intolerance. I tested the diagnosis by giving up gluten, all the while anticipating I wouldn’t feel any different and would be able to go back to eating bread and pasta within a few weeks. I love bread and pasta!  Just a couple weeks after giving up wheat, I felt better. No more abdominal pain and no bloating. I leave a dinner table feeling satisfied but not ill. Additionally, I have more energy and my mood is lighter.

For me, it is a lifestyle change, but for those diagnosed with celiac disease it is life altering. Even 1/8 teaspoon of wheat can cause serious damage to the small intestine of a celiac sufferer. While it is easier than ever before to maintain a gluten free diet — the supermarket shelves stocked with options — it is still trying for people who can eat no gluten at all. Parents of children with celiac especially, agonize over the possibility of cross contamination and potential harm to their kids. On top of this, these moms and dads look ahead to a long life in which their son or daughter will always have to manage their disease. The only treatment being complete avoidance of wheat, barley and rye, they picture their kids always challenged when eating out. They imagine college life without beer — something most of us can’t envision. And, they fear a life of deprivation for their kids, with long term consequences if they are not always vigilant.

Most people agree the genetic altering of wheat and the changes to the way it is grown are what is causing the increase in celiac and gluten intolerance. It has been my secret hope scientists will be able to undo whatever has been done to our wheat over the past few decades to make so many people intolerant of it. Maybe it can be fixed? I don’t want to give up good NYC pizza and Corona beer forever. More than that, I want all the parents of kids with celiac disease to have something to root for — a reason to be hopeful.

Now, looks like they might just have that reason.

Farmers in Kansas are investing in research to find a way to grow gluten-free wheat. The Kansas Wheat Commission put $200,000 toward two years of investigation into understanding which parts of the wheat are causing the sensitivities. We need t-shirts that read, “GO KANSAS!”

Perhaps other organizations will follow suit. Gluten Free wheat would be a huge money maker. As many of us know, the GF products on the market are expensive. We are often paying double for a product alternative, which is not nearly as good as the original. What I wouldn’t pay for a sandwich on real bread!

So, if not just for the benefit of those who suffer with wheat sensitivity, than for the potential for huge profit, I think more farmers and agricultural societies will jump on board. Gluten Free Wheat — now that sounds delicious! Maybe your kids will be able to go the kegger after all.

 

Ten Ways to Maintain your Sanity and Your Dignity During Spring Sports Season

spring sportsEach spring brings with it warmer and longer days, brightly colored, fragrant flowers popping through the thawed ground and the music of the birds returning home. It is a perfect season, full of promise and hope. Most people embrace it after the long, harsh winter, but if you have children who play sports, spring is full of some other things too. It promises longer practices and fluctuating game schedules, bright colored, smelly uniforms popping up all over your house (except, of course, for the one you need right now) and the shrill sounds of crazy parents screaming from the sidelines. With five kids — each one slightly overscheduled, making for a really overscheduled family – I look at this season like I looked at the third trimester of pregnancy. It is just something I have to power through. My goal is not to actually enjoy it, but rather to get to summer without losing my mind, my dignity or worse, my perspective. Here are ten tips and reminders to help you muddle through this beautiful, chaotic, trying season of kids’ sports.

spring sports

  1. Carpools are your friend. Set up carpools early in the season and include as many kids as you can legally fit in your car – maybe even squeeze in one more. We parents, need as much help as we can get, and if you give it, you will get it.

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  1. Toss out the guilt. You do not have to be at every game. You are not a better parent if you witness every toss, catch and kick. Your children will enjoy being able to give you their version of what happened, instead of waiting for your take on the game. By missing a few, you’ll send the message this is not overly important to you, and help to reduce the extreme pressure kids today feel. And, you will be a calmer, better parent overall.

spring sports

  1. Prepare for games and practices the night before, so the morning doesn’t find you tearing apart the house, screaming at your child and running late. Sports are supposed to be fun, and mornings like these only add to everyone’s stress.

spring sports

  1. Speaking of fun, repeat after me, “It is just a game. It is just a game.”

spring sports

  1. Don’t talk about the coach, the other players or the referee in front of your children. Preferably, don’t talk about them at all, but if you have to, make sure you are in an adults-only zone. Badmouthing the coach encourages your children to undermine authority, being critical of other children teaches your children it is o.k. to be hurtful and blaming the ref teaches your children to be sore losers who don’t respect the sport.

spring sports

  1. Do not engage or associate yourself with fans generating bad energy. There is nothing wrong with watching a game from a distance, by yourself, with music in your ears and a Starbucks in your hand. If you enjoy watching your child play, watch your child play.

spring sports

  1. Leave the game on the field. Take your child’s lead. If he or she wants to talk about it in the car home, let them, but refrain from overemphasizing the importance of a hobby. School is the only activity in which they have to participate. It is unhealthy for your child to think the success of their pastime is extremely important to you.

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  1. Remember this always: Your child will not play a professional sport. For the .001% of you for whom this statement is wrong, my apologies.

spring sports

  1. Follow the 24 hour rule. It will save you from sounding like a lunatic and embarrassing your child and yourself. If you are unhappy with your child’s coach for any reason, do NOT address them after the game. Wait a full day for cooler heads to prevail, and if you still want to have the conversation, then set up a mutually agreed upon time to talk. I promise it will be calmer, more productive and more respectful on both ends.

spring sports

10. Encourage your children, but stop there. Do not coach, criticize or complain from the sidelines or in your home. The game is theirs to play. You had your chance. Sports can be valuable to children, but only when their importance is kept in perspective. No one wants to be the kid of the crazy parent.

FDA Approves a Powdered Alcohol … Yippee! Or Ummm, UhOh!

A powdered alcohol, was approved by a federal agency yesterday. My initial thought was, wow, that’s pretty cool. I pictured the astronauts enjoying a well-deserved post moon walk cocktail, a hiker sitting atop a cliff after a long climb mixing a little Palcohol powder into his water, and me, on the beach at sunset with some friends enjoying a little easy to carry happy hour. Oh wait. Shoot! Easy to carry … alcohol … kids … the possibilities are endless.

Growing up, we hid alcohol in the bottom of our overstocked shoulder bags and even in hair spray bottles. Teens today hide it in water bottles and in zip lock bags stuffed in their bras – what security guard is going to risk looking there? Kids are creative when it comes to drug and alcohol use. They are going to have a field day with this one. Even I, out of practice in under 21 year old espionage, have some ideas the most savvy parent or security guard would likely miss. This could be a problem.

I am not alone in my concerns. The criticisms of Palcohol include not only the accessibility for children, but the potential for abuse and the increased ease of drink spiking. The manufacturers of the product address and refute these possibilities on their website and claim much of the opposition is being driven by big business alcohol. They argue, “There shouldn’t be a double standard. One doesn’t ban a product because of irresponsible behavior by a few. “ Still, a few states have already banned the sale of Palcohol.

I’m sure the lawyers hired by Palcohol are making very good, sound arguments, ones my rational side would have to agree with. But, from the mom (often irrational) perspective, I see this product as just one more thing to worry about. With one teenager and two preteens in my house, I’m no stranger to worry. I’ll just add this one to the list.

The take away for me, as a parent, shouldn’t be Palcohol = danger. The take away should be underage drinking continues to pose a real threat. Instead of railing against an interesting, now legal, product, I will take the steps shown time and again to decrease the chance my children will engage in risky behavior.

– Open communication about drugs and alcohol needs to start early.

– Check in with children often about their social life and possible struggles. You don’t have to be their best friend, but stay interested and involved.

– Rules and boundaries should be fair, but they must be enforced.

– Family dinners are a must.

– Being vigilant about the warning signs of addiction is critical.

I don’t think Palcohol will significantly increase the risk my children will participate in underage drinking. It will though, be added to the conversation immediately.

Do you think it comes in chardonnay flavor?

Ovarian Cancer — the Silent Killer … or is it?

It is ovarian cancer awareness week — for my sisters and me at least. Our mother’s birthday was this past Sunday, March 1st. We should’ve woken that morning with a slight hangover and a happy afterglow from the successful 70th birthday party we threw her. She was a woman worth celebrating, and there is no doubt her 70th would have been an event.

Mommy

My mom at 60, two years after her diagnosis.

 

Instead, I woke with an all too familiar pit in my stomach and ache in my chest. Seven and a half years later, the shock of her death can still bring me to my knees. Most days, I have a low-grade generalized feeling of loss, but every once in a while … Bam! I’m brought back to 2007, and the pain is present and acute. I’m brought back to the irrational and useless feelings of anger, bitterness and confusion.

Why her? She was active, thin, healthy and eternally happy. She never smoked, drank Pinot Grigio occasionally, but stopped when she “got that funny feeling”, and was never ill. She had four children — pregnancy is supposed to be protective. Her parents lived to 97 and 102. So why, at 58, an age that to me seems younger and younger each year, did she develop a tumor on her ovary? There’s no good explanation, which is something I must simply accept. As my mom, Madelyn, would say, “There are mothers with young children who are dying from this. This isn’t about what’s fair.”

Had it been discovered while still confined to her pelvis, she would’ve had a chance, a good chance. It was only after cancer cells travelled to her diaphragm and lungs, divided and grew into more tumors, did she experience some shortness of breath. This prompted a visit to a walk in clinic, assuming a diagnosis of pneumonia and hoping for an antibiotic to clear things up. She had a friend’s party to attend the next day. About 24 hours later, with a stage 4 ovarian cancer diagnosis, life, as we knew it, was over.

I wonder incessantly if she had been more of a complainer, more selfish, more egocentric, would she have noticed the subtle symptoms of her illness earlier? Would she have noticed them early enough to save her life?

What might my mother have been feeling? As a gender, we have a tendency to downplay our aches and pains, focusing on the needs of others and our families. How often do you hear a mom say, “I am too busy to get sick.” Fighting through a cold might be noble, but ignoring warning signs can be fatal.

– This year, it is estimated 21,290 women will be diagnosed with ovarian cancer and 14,180 women will die of the disease.

– Currently, there is no routine screening for ovarian cancer.*

– Symptoms include:
– bloating
– pelvic or abdominal pain
– difficulty eating or feeling full quickly
– urinary symptoms including urgency or frequency

Other symptoms, which are considered less specific, are fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities.

These may be vague, but they are still real symptoms. Is ovarian cancer the Silent Killer or is it the Ignored Killer? Ovarian cancer grows and spreads very quickly. Too often it is diagnosed in its later stages because we women overlook the signals our bodies are sending, or we try to tough it out. If you are experiencing any of these symptoms consistently, if you have a sixth sense something is not right, PLEASE talk to your doctor. It is a conversation which could save your life. Share this with the women you love!

 

* Since publishing this article, I’ve been asked if there are tests for ovarian cancer. The answer is yes. There is a blood test which looks at a marker called CA125, but it is not specific for ovarian cancer leading to a lot of false positives. A pelvic ultrasound (sonogram) will detect a tumor on the ovary, but it is not performed routinely at your GYN visits.

 

 

Memory Loss — When to Worry

memory lossI finished reading Still Alice by Lisa Genova the day before Julianne Moore won the Best Actress Oscar for her role as a 50 year old Harvard professor faced with early-onset Alzheimer’s in the movie adaptation. It took me only a day and a half, with many interruptions, to pour through it cover to cover. I couldn’t put it down, and I loved it, in that way you can love something which makes you cringe.

Occasionally, I associate too much with a character in a novel, becoming empathetic to the point of near paralysis. I walked around in an amnesiac fog for 36 hours, but I’m better now. I think.

I do forget things frequently. I’m terrible with names. I lose my phone several times a day, every day. I briefly forget which kids are where, and who has to be picked up when. I can’t remember if I’ve been to a certain restaurant or if I like a certain wine. I blame these memory lapses on the business of life, a mom’s tendency to devote at least part of her brain to each of her children, and poor organization. (I do not blame it on the wine.)

When, though, do normal memory lapses and loss due to aging become a diagnosable disease?

Look for these warning signs:

1. You forget how to do something you have done many times before. Forgetting how to get to your best friend’s house, or struggling to remember how to make your favorite meal can be a tip off to a real problem.

2. You have trouble learning something new. Electronics, computers or card games used to come easy to you, and now, you can’t figure out how to start the new toaster. You used to be handy, and now, you can’t figure out how to put together one of your children or grandchildren’s Christmas presents.

3.  You repeat yourself in the same conversation. I think I do this a lot, but it is usually very late at night, and the person I am talking to is tuning me out.  It can be very frustrating to both the speaker and the listener as it is tempting to say, “Stop talking. You told me this already and if I have to hear about your work-out this routine one more time, someone is going to get hurt!!!”  I think I do this a lot, but it is usually very late at night, and the person I am talking to is probably tuning me out.

4.  You are having trouble making choices. You stare in the fridge trying to decide what to drink, or you stare at the closet with no idea what to wear. This may be a red flag if it is happening routinely.

5.  You can’t keep track of what happens in a day. If you are having an increasingly difficult time remembering if you showered, took out the garbage or went to the food store, you should discuss your concerns with your doctor.

I started each of these warning signs with “you”, but most often, if there is a true diagnosable problem, it will be a friend or family member who will notice first.  If someone else tells you that you are losing it — hopefully, they find a more sensitive way to say it — you should probably take it seriously.  If you have a loved one whose memory seems to be failing, bite the bullet and tell them you are worried.  There are many things that can cause memory loss in addition to dementia, some of which are correctable.  There are also treatments for Alzheimer’s and other forms of dementia that can help to halt the progression of the disease.  If you noticed someone was short of breath or was clutching at his or her chest, you would address it.   The brain is an organ just like the heart and lungs.  It needs to be taken care of.

Speaking of letting people know you are worried about them, I am offering $500 bucks to anyone who tips me off about my intervention.

Ash Wednesday: Baby Steps to Better Health

IMG_1041Today is Ash Wednesday, the first day of Lent. It is the day you see people with a dirty forehead and until you remember what day it is, or someone explains it to you, you want to tell them to look in the mirror. We Catholics believe this period before Easter Sunday is a time to reflect on our lives and focus on our faith. When I was a child, we were taught to give up something, be it cookies, soda or candy. As an adult many people give up alcohol — for me this would be more of a sacrifice for those who have to live with me. Junk food and coffee are common ones. I personally know someone who gave up mastarbation one year. This was harder on me … um, I mean his wife, than it was on him. I have a cousin who gave up Lays potato chips every year, not any other kind, just Lays, because they were his favorite. He was probably missing the point, but maybe we all are. Sacrifice often leads to bitterness, envy and cravings. The real goal should be to use this time to make positive changes, ones which can lead to an improved mind, body and spirituality. Just like New Year’s Resolutions, goals are easy to set but hard to fulfill. Don’t take on too much. Try these five simple ways to make changes which seem small, but which may improve your mental and physical health.

1 — Each night, write down 2-3 things you are grateful for. Keep the list next to your bed and read it before closing your eyes. Grateful people are both happier and healthier.

2– Add two servings of vegetables or fruit to your day. The fiber, antioxidants, vitamins and minerals will give your body a boost and you will naturally have less appetite for high calorie processed foods. Zucchini, cucumber, carrots are great to eat raw, and like apples and pears, will last a while. Stock up and keep them on hand.

3 — Stretch. Yoga is a great form of exercise, but for now, just stretch for 2 minutes when you wake in the morning. It will improve your mood, get your blood flowing and reduce the risk of injury — especially on these cold days.

4 — Don’t look at your phone or any other screen at least a half an hour before bed. You will fall asleep faster and sleep better. Try to work up to an hour, which is better, but for now, baby steps.

5 — Drink more water. Have a glass before any other beverage or snack. This will improve your energy and your immune system, benefit your digestive system and curb your appetite.

Additive is better than restrictive. Add these simple things to your day to day, and good health and better choices are bound to follow.

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